There is an old expression about walking in another person’s shoes. It is meant to get us thinking about what another person’s life is like. Well, I was thinking today about that, or to put it another way, empathy. I can gain a fair bit of understanding about another person’s situation. It’s very possible to care passionately about the plight of others and put lots of energy into helping them. But I was wondering if we can truly understand another person’s situation? Can we really walk in their shoes metaphorically, obviously some of us can’t ‘walk’ at all.
What got me down this line was thinking about all those who are doing great things for disabled people. Let me make an aside here, I freely use the word ‘disabled’ because I am ‘disabled’ from doing the things I once could do. I am not ‘differently able’ I have new limitations that did not exist before and it is a nonsense to try and hide that through inclusive language. I do not accept my ‘disability’ as part of me; it is a nuisance and I do everything I can to work around it. The world makes that extremely hard. Now back to my point. The many people doing things for disabled people. Many of them are doing it because they have disabled children, parents or partners. It got me thinking about perspectives. The perspective of a person trying to understand the situation of another.
Due to the nature of my condition, I occasionally lose the use of my arms for a period of time. So, I can get a glimpse into what it’s like to have no use of your arms. But I would not claim to truly understand what that feels like to have no use of my arms because I get it back; that may change in the future. Therefore, I can get a flavour of what it’s like but not fully live the experience. That is an important distinction. It is possible for any able-bodied person to try out a wheelchair to see how that feels, put a blindfold on to see what blindness is like, wear headphones to get a feeling of deafness, put on gloves to mimic loss of feeling, but none of these things give the participant a true experience of the condition they mimic because they end unlike the condition they are mimicking. They are a choice that is for a limited time. Choice being the key word, it can end at will.
I remember in the 1980’s a cabinet minister made a big fanfare of living in a flat on Income Support for a week. What a rubbish experiment! Most people could starve for a week if needed so to say that he could live on limited income for a week was a ridiculous idea. Most people can cope with any limitation when they know an end is in sight. Of course, in the situation I mention the cabinet minister didn’t have to buy cleaning products, gifts, holidays, clothes, heating etc. Nor did he have a family to feed.
Illness and disability are conditions which lack choice, they are relentlessness. They wear away at you day after day. It is not possible to really get inside that without experiencing it directly. So that even the most good hearted and noble minded able bodied person cannot truly understand what that is like just observing from outside. What they do fully understand is the effect of illness and disability has on their lives. The limitations it causes on daily life. The extra work caring for someone. The financial constraints. The changes to plans. The change of personality they see in their loved ones. All these things are clear to them; but they are outward consequences of the illness or disability. Only a disabled person can know what it is to be disabled; what it feels like. Because words never fully express feelings. The change within a person is just that; an internal change.
Let me draw together what I am saying. It is wonderful that so many able-bodied people want to speak on behalf of the disabled; do not stop. But we can also speak for ourselves. Quite a lot of us are very good at communicating ideas. My feeling is that when the government or a housing association or the media or a specialist disability organisation is seeking to canvas the way forward on accessibility, perhaps ‘The Horse’s Mouth’ may be a good starting point. Why is it that so much accessible planning, design and media exclude the very people it is aimed at? Surely, we should be involved. Shouldn’t the main people on an accessible planning committee be disabled? How about members of every other type of disability planning organisation? Why are we not the first people asked to comment on the lack of accessible housing? We have a voice and brains. It seems utterly absurd that this has not been pointed out before. I do realise that there are one or two who seem to speak for us all; but most of the voices we hear are the able-bodied members of associations, political parties, the media and companies speaking on our behalf. Yes, many have an experience of someone with disability, but they lack first-hand experience. Can we please be heard.
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